“Our study demonstrates the high sensitivity of [gallium Ga-68 dotatate] in the localization of [ectopic Cushing’s syndrome], for both occult primary tumors and metastatic lesions,” the researchers wrote. “Importantly, the use of [gallium Ga-68 dotatate] impacted clinical management in 64% of patients with [ectopic Cushing’s syndrome] overall.” The researche […]

The 11th annual Pituitary Day will take place on October 19, 2019 Patients living with pituitary disorders can hear lectures from our pituitary specialists, see movies of pituitary surgeries and hear from other patients about their experience living with pituitary disease and undergoing surgery.

Cynthia is from Ruckersville, VA. She is testing for Cushing's due to many symptoms. tested for CD because after exhaustive research on AVN (Avascular Necrosis) related to other diseases. I have four known areas of AVN & after seeing the symptoms of CD, I realized may have this. I also have numerous other diseases Lupus, Sojgrens, Hypothyroid, High […]

Today is the Thirteenth Anniversary of my kidney cancer surgery. These thirteen years have been bonus years for me. For my cancer stage, the 5-year survival rate was 81% and I’ve made it more than twice that long – so far.

Kathy was diagnosed with a pituitary tumor in 1991. At the time the only symptom she was aware of was a severe headache. She had a transsphenoidal resection followed by radiation therapy for 23 days. They said they could not remove all of the tumor.

Sadly, we lost another Cushing’s patient on Friday, May 9, 2014. Melinda was a member of the Cushing’s Help message boards since Jun 24, 2007. She was only 25 and left behind a young son and many loving family members.

He died of a presumed heart attack. September 19, 2015 he said "'I was diagnosed hypertensive way back when I was 20. The condition remained for years, and became more acute with my cushings pit tumor. I still have high blood pressure, partially teated with three meds. I'll have to consult my doc and see if this may also be an issue."

'My name is Caroline and I dont post often but have met a few of you guys and read the board regularly, it has definitely been a godsend to cushies everywhere. The reason I am writing tonight is I have just received devastating information about a dear friend of mine, and a woman some of you may have met during testing. Her name is Kathryn Miller and sh […]

Ectopic CS is a condition caused by an adrenocorticotropic hormone (ACTH)-secreting tumor outside the pituitary or adrenal glands. The excess ACTH then acts on the adrenal glands, causing them to produce too much cortisol.

Small cell cancer is more common in older men, those in their 60s or 70s. Sources of ectopic ACTH synthesis arising in the pelvis are rare; nonetheless, ACTH overproduction has been linked to tumors in the gonads and genitourinary organs, including the prostate.

Still, evidence suggests there are less than 30 published cases reporting ectopic CS caused by prostate cancer.

Researchers from the Southern Adelaide Local Health Network and the Royal Adelaide Hospital in Australia described the case of an 84-year-old man who complained of fatigue, back pain, and lack of appetite.

The patient had a history of locally invasive prostate cancer even though he didn’t experience any symptoms of this disease.

Ultrasound examination showed an enlarged prostate plus obstructed ureters — the tubes that carry urine from the kidney to the bladder. To remove the obstruction, doctors inserted a thin tube into both ureters and restored urine flow.

After the procedure, the man had low levels of calcium, a depressed mood, and back pain, all of which compromised his recovery. Imaging of his back showed no obvious reason for his complaints, and he was discharged.

Eight days later, the patient went to the emergency room of a large public hospital because of back pain radiating to his left buttock. The man also had mild proximal weakness on both sides. He was thinner, and had low levels of calcium, high blood pressure and serum bicarbonate levels, plus elevated blood sugar. In addition, his depression was much worse.

A psychiatrist prescribed him an antidepressant called mirtazapine, and regular follow-up showed that his mood did improve with therapy.

A computed tomography (CT) scan revealed a 10.5 cm tumor on the prostate and metastasis on the lungs and liver. Further testing showed high serum cortisol and ACTH levels, consistent with a diagnosis of Cushing’s syndrome.

But researchers could not identify the ACTH source, and three weeks later, the patient died of a generalized bacterial infection, despite treatment with broad-spectrum antibiotics.

An autopsy revealed that the cancer had spread to the pelvic sidewalls and to one of the adrenal glands. Tissue analysis revealed that the patient had two types of cancer: acinar adenocarcinoma and small cell neuroendocrine carcinoma — which could explain the excess ACTH.

Cause of death was bronchopneumonia, a severe inflammation of the lungs, triggered by an invasive fungal infection.

Investigators believe there are things to be learned from this case, saying, “Neither the visceral metastases nor aggressive growth of the pelvic mass noted on imaging were typical of prostatic adenocarcinoma. [Plus], an incomplete diagnosis at death was the precipitant for a post-mortem examination. The autopsy findings were beneficial to the patient’s family and treating team. The case was discussed at a regular teaching meeting at a large tertiary hospital and, thus, was beneficial to a wide medical audience.”

Although a rare cause of ectopic ACTH synthesis, small cell prostate cancer should be considered in men presenting with Cushing’s syndrome, especially in those with a “mystery” source of ACTH overproduction.

“This case highlights the importance of multidisciplinary evaluation of clinical cases both [before and after death], and is a fine example of how autopsy findings can be used to benefit a wide audience,” the researchers concluded.